FTD & Resilience. Get your Nikes on!

Running shoes

You’ve heard me talk about strength, courage, pain and love in my articles here.





…………………Now that’s something completely different.

Imagine you are in the middle of running a marathon. You didn’t have time to train for it, someone just called you and said “Hey, the marathon is tomorrow, you’re in!”

No training, no diet changes, no education, no building up for it.

The marathon that is caring for someone with FTD is a little like that. It can start pretty slowly, innocuously. And you think, hmm this isn’t so bad. You try to pace yourself. everything’s under control. You see the first few miles go by, stretch the legs a little, take a few sips of water. After about 5 miles, you’re into it now. Rhythm, pace, -you know you can do it!

Those first weeks, months, even years for some people with FTD can seem quite manageable. You get a little routine going. You are able to continue many of the things you did before the diagnosis and/or suspicion. Going out to dinner, visiting with friends. Trips, movies, all the good stuff that life is all about.

Then, around mile 18 (or so I’ve heard) you hit what is commonly known amongst runners as “The Wall”.wall

The wall is a fearsome thing indeed. The wall in FTD comes around the middle stages.That time when your loved one begins to metamorphose into someone you don’t know. Then the race really begins.

running gif

You have barely got used to the very fact that something is different and changes will be coming, when bam! Here they are. The changes. The mood swings, the irrationality, the anti-social behavior and well, frankly, the meanness. Then all you want to do is run away. FTD is most definitely not a sprint, its a marathon.  A marathon you haven’t trained for. A marathon with no medal at the end. Sometimes you will have a team with you, other times you will be solo. Most of the time, you will be running alone. Coping with this requires the resilience of a marathon runner for sure.

Resilience is one of those spirits contained within humanity that helps us to endure pain, torture, loss and grief. Resilience is what has helped humans survive for millions of years. You CAN endure. You can and will overcome. I know, I’ve done it. You have what it takes contained within you. It’s all trained and ready to go. There’s no manual. No neat set of instructions. You know your loved one better than anyone. You know what they need. You know what you can give. And just when you think you can’t give any more, you will find a reserve within you that will help you go on.

Resilience. It helps the millions of marathon runners cross that finish line all the time. In the FTD world, the finish line is not one we really want to reach. We don’t want to get to that banner across the street that tells us it’s over. As painful as the race is, we don’t want it to be over.

Benjamin Franklin (not a man who ran many marathons) said:

“I didn’t fail the test – I just found 100 ways to do it wrong”

Your test, your assignment, (should you choose to accept it) is to run your marathon with the heart of a lion, the stealth of a tiger and the resilience of Nelson Mandela. Now there was a man who knew about resilience.  Your life as you knew it is changed forever, just as Nelson’s was. Acceptance is not the same as giving up. Accepting the results of FTD is not giving in to it. Accepting is not resignation. Acceptance is a tool that will help you win through, one battle at a time. One wall at a time. The finish line will eventually be in sight.

The banner across the road will read “Finish”. You will not receive a medal. But you will have the satisfaction of knowing that you did everything you could to carry you and your loved one across that line. Everything you could, despite the blisters in your heart, the pain in your soul and the sweat on your brow.

Medal of the heartHere is a medal for everyone who is caring for Frontotemporal Degeneration right now. I commend your bravery, your love and your resilience.

Caregiver Coping Strategies: Managing Stress in Minutes

Wonderful and practical examples of how not to let the stress of what you you do get to you. And written so well, it doesn’t feel like someone is preaching at you.

The Long and Winding Road...

I’m extremely pleased to bring you a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

In Part 1 of the series, Mara shares some surprisingly simple ideas for managing stress. The beauty of these tips is that they don’t require you to leave your house, ask anyone else for help, or spend any money.

Caregiver Coping Strategies Part 1 of 3: Managing Stress in Minutes

We’ve all heard the numbers, we live them. We know that according the Alzheimer’s Association’s latest Facts and Figures Report (2014), nearly 15.5 million family and friends provided 17.7 billion hours of unpaid care to those…

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FTD – World Champion Life-Stealer.

World Cup 2014

The World Cup

On Thursday June 12, 2014, the footballing world will come together to rejoice in our passion. The beautiful game will be in all its glory in Brasil.

We have waited four years for it to come around again. We have waited for our teams to qualify, we have watched as they prepared for what, for some of the players, will be the last opportunity to play for their country on the world’s stage. For others, it will be the first. A time to show the world what they’ve got. A chance to move up to the next stage of their career.

England’s national team was once a mighty, formidable force. Every Englishman truly believed that every four years, we had the chance of repeating our success in 1966. We won the World Cup in 1966. Against the Germans. 4 – 2!! Yeeeesss!! Sublime victory was ours. We dined out on it for forty years.

Sadly, our more recent form belies that glittering past. No longer do we have a solid national pool of players capable of beating the world. Most clubs are made up of international superstars who all go back to play for their own country when the world cup comes around.

My husband was an avid football fan. Eat, breathe, sleep football. He watched it, he played it, he coached it. My sons inherited his passion, so I have it too. Cheering on your country at the global level is an experience not to be missed. Kind of like the Olympics only better. The tribal nature of football extends to extreme rivalry between local clubs, which is only overlooked when the same players play for your country. Steven Gerrard, of Liverpool, hated and despised by millions of fans of rival clubs in England, will be the hero of the hour if he scores for England’s national team against Italy next Saturday.
England football fansI will be among the crowd at an English pub here in Phoenix, screaming with my countrymen that the referee is a wanker, or that Balotelli should be sent off for diving. I will cheer when (if) Gerrard scores. Because he’s English and so am I. But once the season begins again in August and he goes back to being our rival, we will revile him. Ha ha !

Anyway, pardon my digression. My point today is that my husband’s passion for football was slowly eroded by the bastard disease until nothing was left. A piece of his very being –his love for football in general and Manchester United in particular, was eaten away until no trace or memory of it remained. It was a sad sight to see. He would get up and wander around the house in the middle of games. He could not focus for more than about five minutes on his beloved team.

This was a man who could tell you who scored against West Ham in the 23rd minute of the FA Cup Final in 1967. (I just made that up because I have no idea who was even IN the FA Cup Final in 1967). But you get my drift.

The last World Cup was in 2010. My husband had been diagnosed three years earlier with FTD. He was still able to enjoy it and appreciated the spectacle, the skill, the passion.

In FTD, passion is overcome by obsession. But not obsession for the past passion, obsession for the minutest of things upon which your FTD’er will focus on for hours at a time. TV, laundry, eating, cleaning, sleeping, dividing food into minute pieces. Whatever it is, they will pursue it with a passion until it drives you crazy. Until the clothes they are wearing/washing etc wear out. Until all the candy is gone. Until you are exhausted with the sheer persistence of their obsession.

As with all things FTD, this too, generally speaking, will pass. It’s a phase. Don’t you get sick of hearing that.? Kind of like with your kids, biting, kicking, whatever the bad behavior is. “It’s a phase”, “It’ll pass”. well, it usually does in FTD too, only to be replaced with another, sometimes even more annoying/disgusting/upsetting phase. I’m just keepin’ it real here.

Don’t be disheartened. You’re only human. Your best is good enough. (Unless you’re Steven Gerrard). At least it’s never boring having FTD in your life. I’m sure you have figured or are figuring out coping mechanisms by now. Just accept that it is out of your control. FTD is awesome at coming up with some new thing get to you.  It is picking apart your life, piece by piece. It’s a disease. You have something powerful to help you cope.


Love and memory.

Love for all you are and do. Love for your FTD’er. Whatever they do or say.

Undying, indefatigable love.

Memory for what you had and what you have lost. Memory you can hold in your heart forever.

It might not seem like much right now, for you are having a hard time just getting through the day. One day at a time.

Spend a little time in your bed at night, thinking of good things. Things you shared, things you laughed at, things you loved. The World Cup. Just a few minutes is all it may take to put your head in a better place. It will give you the courage you need to face the next day. Just when you think you can’t take any more.


English Flag

Believe me, if you’ve ever seen England play lately, you will know the meaning of true, blind dedication and love.